If you’re tired of reading my essays, take a listen to this interview I did with Jana Panarites on her podcast, Agewyz, where she gives voice to the struggles of caregivers. After all, we all are, have been or will be caregivers at some point in our lives. I hope you’ll take the time to listen and share with others. Maybe you would like to share your story with Jana too? Click HERE to listen.
My father was in town recently for a family occasion. He is pushing 80 and while he is very independent, I see that he slowing down a bit. He lives in Israel now, so I get only the occasional peek into how he is faring. Most of the time I have to rely on his reports by phone and email. Even when he is out of sight, he is always on my mind.
I received some great wisdom on this subject from my family’s oncologist. He is a thoughtful person who I see routinely for follow up of the breast cancer I had diagnosed and treated in 2010. This doctor had also been treating my mother for metastatic melanoma since 2002, which had recurred shortly after I finished my cancer treatment. My mother had significant pain, caused by disease pressing on nerves in her spine and neck. While my father was a loving and devoted caregiver, I was anticipating how to go about helping them as her cancer slowly destroyed her body.
“You want to navigate them with grace,” he said.
What a lovely way to frame this difficult time in life.
As a middle-age person with a young-ish family, I had been going about the business of raising my children, tending to my marriage, and bustling about in my community. My parents had been healthy and active. They were an important part of my family life, helping me out when needed, and just being involved, loving grandparents.
Then slowly, without fanfare, things shifted. My independent parents seemed to become lost in the mire of medical care, with the medical equivalent of “too-many-cooks-in-the kitchen.” There was the internist, the endocrinologist, pain team, and oncologist to name a few. This, plus their generational inclination to be compliant patients without asking too many questions, not asking questions they didn’t want to know the answer to, or challenging doctors, made for an often chaotic and sometimes ineffective care plan despite the caring and good intentions of the health care professionals.
Fortunately I lived near my parents so I would sometimes take my mother to doctor’s appointments to give my father a break. It also gave me the opportunity to ask questions and take notes. They drifted along in this vein for a while. Their world began to shrink as my mother felt worse. She slept a lot from the pain medicine. Most of their outings were to see doctors.
I finally intervened when my mother’s pain was not controlled adequately. The outpatient model of medical care was no longer working: the patient/family calls the doctor’s office and waits for the nurse to call back, and then has to wait for the nurse to talk to the doctor and call back again with a pain plan. Then the prescription needs to be called in to the pharmacy, which meant my father had to go pick it up. And in the midst of all this waiting, my mother suffered and my father felt helpless.
I knew a lot about home hospice care from when I worked as a social worker in a cancer center at a major university hospital, so I knew it was what my parents needed. I explained the concept to my dad – nurses come to you, assess the situation, speak to the doctors and provide whatever you need. He was on board. My mother took a little convincing, as the word “hospice” felt so scary to her. She wasn’t ready to give up hope.
“Mom, I want you to live as long as you can. But I can’t watch you live in pain. This is no way to live,” I told her.
She reluctantly agreed. My mother lived three more weeks and died comfortably in her home, at the age of 74. It was heart-wrenching and awful but we navigated my parents with grace, the same way they navigated our childhoods.
It is not always obvious when it is time to intervene with aging parents. After a lifetime of being independent, they will not always ask for help. And after a lifetime of being their child, it is difficult to insert yourself into the caregiver role for, doesn’t mother always know best? It is a fine balance of respecting their autonomy and independence while gently giving support and assistance, whether they ask for it or not. Sometimes it takes an event to occur, like a fall or a hospitalization, to present the opportunity for intervention.
I watched my devoted mother care for her mother who had dementia the last 15 years of her life until she died at age 99, just four years before my mother. I learned about quietly and lovingly honoring your parent by caring for them in their old age.
After all, there but for the grace of God go I.
I used to be a hospice salesperson. Actually, I was a social worker in a cancer center. Many patients did well with their treatments and went on to live long lives. But many ran out of options after experimental treatments. The doctors had nothing else to offer them. I was often called in after the doctor dropped the “hospice bomb,” as educating about hospice was not always in the oncologists skill set.
Here’s what I would say. Home hospice care is a way for your doctor to continue taking care of you, without you having to come to the doctor’s office. The hospice nurse functions as the doctor’s eyes and ears, seeking input and guidance from the patient’s primary oncologist. The hospice nurses are on call 24 hours a day, so if you or your family member has a concern or are scared, they are available by phone or will come to your home (even in the middle of the night.) Social workers, home health aides, clergy and volunteers help round out the hospice team. I would reassure patients that they were not being dumped by their medical provider, but that it was felt that the hospice model of care was the most appropriate at this point in time. I would tell family members that hospice nurses teach families about the dying process (from cancer, in this case,) so they know what to expect. That death had been taken out of the home in the last several decades, so most of us have no idea how someone dies. I would advise the family about the things that would be helpful to care for their loved one at home – a hospital bed, a bedside table, a bedside commode. I explained that home hospice does not provide 24 hour care – they are there to support the patient’s primary caregiver and their network of family and friends. I would help families decide if this was realistic for them to do, taking into consideration the patient’s wishes.
And then I was suddenly on the flip side of this conversation.
My mother had cancer for 12 years. She had 2 years of treatment, an 8 year remission, and a recurrence 2 years ago. She actively pursued every treatment available to her. She endured awful chemotherapy. Fortunately, she was relatively symptom-free from her cancer until a year ago when she developed pain in her arm and chest. She consulted with her oncologists and a pain team, with little relief. My petite mother, who only took one aspirin when she had a headache instead of two, was on whopping doses of serious narcotics. She hated it, but preferred being sleepy to being in pain. The months wore on. She continued to pursue treatment, though her options were dwindling.
I said to my father, “Sometimes I think she’s going to be fine, and sometimes I think she’s dying right before my eyes.”
It was a very difficult process to watch. I respected my parents’ autonomy and my mother’s desire to pursue life. I wanted to “navigate them with grace,” as her oncologist (and mine as well) so beautifully articulated for me. But hospice was always in the back of my mind. The pain medicine did not always bring relief and my mother was in stoic agony. My parents would call the oncology practice for advice and would have to wait for the nurse to call back. My father felt helpless, as Mom’s primary caregiver, and at a loss, not knowing if he could offer her more pain medicine. In August, while still receiving a new chemotherapy, I finally broached the subject with my Mother.
I said, “Mom, I really wish you had some home care.”
“You mean, hospice?” she asked.
She knew what I used to do for a living and what was in the back of my mind. She was reluctant at first, saying she wasn’t ready for that. I told her that I wasn’t suggesting that she crawl into bed and die, but rather I wanted her to live as long as possible. I just couldn’t watch her live in pain and suffering any longer.
My father was very agreeable and my Mother relented soon after.
“Mom, you had to make decisions for your mother that she wasn’t always happy about (she had Alzheimer’s) but you knew were in her best interest. I want to do the same for you,” I told her. It was really hard.
The hospice people came to do the intake. My mother was completely dressed, had make-up on, and put out cookies for them. Always the lady. Regal, my sister says.
She didn’t want to call it “hospice,” which the staff said was fine, as long as she knew what the type of care was all about. It’s about allowing the disease to take it’s natural course. No heroic measures. Don’t call 911, as the EMTs are obligated to perform all possible life-saving actions. A person could end up in the hospital where they determined they didn’t want to be by choosing home hospice.
We took care of Mom in her home, my Dad at the helm and the rest of my family helping out. The hospice nurses were phenomenal, visiting regularly and tending to my Mother in the middle of the night when we called. They helped with her breathing, which had become labored, and best of all they found the right medicine to get rid of her pain. They eased the pain for all of us of a very emotionally and physically draining and painful process.
Tending to her and watching as she slowly slipped away was wrenching but it allowed us to give to our mother in her last days the way she effortlessly gave to us our whole lives. She brought us into the world and we were going to honor her by helping her peacefully transition to the next world.
She died peacefully, three and a half weeks after signing on to hospice, at home, surrounded by her family. I learned that having my Mom die in the home that she loved was a gift. Even when she had a hospital bed, she made sure she had a view out the wall of glass in her bedroom at the scenes of nature that were such a source of comfort and joy to her throughout her life. It was so much better to be caring for my Mom in the family home than in a crowded hospital room, with all the inherent sounds, smells and strangers. My husband noted that rather than focusing on the fact that she died in the house, the predominant feeling that people share is her absence from the space that she was so positively associated with. Hospice helped make it happen. We were all grateful for that.